In navigating the waters of our medical care for Kyleigh one thing has become abundantly clear…. the world needs VACTERL doctors.

First off each VACTERL kid is as unique as every human. No two kids have the same exact diagnosis. None need the same exact pathway of care. But all of them share multiple congenital defects that must be repaired. Currently the only way is to navigate these waters as a parent yourself. Our general pediatrician is inexperienced in seeing this association and isn’t well versed in the specific nuiances of the association much less the ones that apply to Kyleigh. For instance, the flavor of heart defect could mean you are in Ohio, Michigan, or Pennsylvania. Each have a separate repair specialty.

When Carol Cottrill was our cardiologist she filled this role the best anyone has thus far. All medical decisions and surgeries were cleared by Carol first. Looking back this was a huge relief for us knowing one person was calling the shots. And this one person was WELL respected at any hospital we visited.

Right now we are on a personal quest to try and make our surgeon since day two Dr. Joe Icono a VACTERL doctor.

What exactly would a VACTERL doctor do?
1. Be versed in the common types of defects seen in VACTERL kids.
2. Know which specialists to recommend based on these defects.
3. Followup on care, questions, problems, tests
4. Guide you thru baseline tests are various stages of your life to watch for early signs and indicators for your specific congenital defects.
5. Be available via email

A VACTERL doctor would help you navigate the medical waters of making your child fully repaired from all their congenital anomalies with minimal irreversible damage, side effects, or long term care. They would care for your VACTERL kid from birth to fully repair and any followup care necessary. A VACTERL doctor would also present a Gantt chart of the procedures necessary for your child so you know what to expect next and what order things should go in.

Currently you are bounced from specialist to specialist as your defects are repaired. We were with heart until the heart was fixed. Then we were cleared for butt surgery and passed onto colorectal. Then passed on to neurosurgery after butt created to see if that was needed before closure. There is no glue other than the parents holding all these different procedures, specialists and communication together. We have to carry all her medical records in a binder with us when we go to facilitate better and faster care.

Dr. Joe seems up to the task and perhaps this is something that UK can work on. I see every Top Ten children’s hospital having some specialty they are known for. Right now UK children’s is just a plain vanilla treat everything hospital. Perhaps if they take up VACTERL doctoring as their specialty they will reach their Top Twenty goal. At least other kids in Kentucky like Kyleigh could stay home and be treated.

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